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I haven’t blogged for quite a long while. With two boys with special needs at home, requiring help and support to access the curriculum at school, it is fair to say that we took a decision to put all our energies into helping them achieve their aims at school, and to achieve their dreams in their out of school lives. So blogging has I am afraid gone by the by. However, today I am hit by the knowledge that Monday will be the date of William’s last GCSE exam and he will wear his school uniform for the last time. It marks the end of fourteen years of planning, plotting, fighting, hoping and praying for him to reach this time happy and with some qualifications and with options to go on to A levels. The signs are very positive that he will have passed his exams. He has worked hard, and knows where he wants to go – he will start sixth form in September. I am still anxious for the future as I look at the way the government says it would like to develop education. I know that this is not the end of the road. I know that both of my children have a way to go in overcoming the obstacles that will be placed in their way by their disabilities, but I am struck dumb by their tenacity and will to work hard and to succeed.

The green paper for SEN and disability states that those children who currently have a statement, less than 3% of children with SEN, will have an education, health and care plan (EHCP) under the new system. There are also plans to improve achievement for children who are disadvantaged through pastoral care. So far, however, there are only very vague indications about how SEN will be provided for in children who fall into neither of the above categories and have less severe SEN. There will be a lot of children in this lower level category of need! Many of these children will have very real SEN requiring specialist support.

I have commented regularly about the limp and woolly provision currently available to unstatemented children with SEN through the school action and school action plus categories of the graduated response process of our current system for meeting SEN. Yet the new system promises to scrap these classifications replacing them with a new tier of provision. Children will be ‘lumped together’ in this category, with some receiving pastoral care because they are disadvantaged, and others receiving support for SEN through ‘better teaching’ and schools sharing best practice. Also, the voluntary sector will be brought in to carry out so far unspecified roles. Remember, this new system will be implemented by health and education services that have undergone savage cuts and will draw heavily on untrained support from the voluntary sector. I don’t believe it is possible to improve provision for children with SEN and disabilities by cutting specialist services and replacing these with an untrained voluntary sector.

I can see a lot of children who need specialist intervention for their SEN receiving little more than pastoral support if the school has nothing else to offer, leading to misery and failure for thousands of children. How do I know? This is exactly what happened to my son under the deeply flawed but infinitely more robust graduated response of our current system.

The lack of clarity surrounding this is simply not good enough. Everyone has the opportunity to influence these policies by taking the opportunity to make representations to the consultation, and write to their MP to ask how, in detail will the plans be funded and implemented.

The Green Paper on SEN and Disability, issued yesterday, has caused some furore as parents and children, schools, health and education workers and other stakeholders attempt to take in its implications for the future. I for one have been thinking a lot about the report.

The most pressing thing for me is this: as the parent of children who have statements, I am very interested in the Education, Health and Care plans which will cover a child from birth to the age of 25. If done right I see huge potential for supporting a child through school and into work. The Green Paper detailed that the assessment for these plans is to be carried out over a day, with professionals coming to the child rather than having a number of assessments carried out at different locations and over a period of months. That is all very well, but when you have a child who needs a statement – or similar support, it is vitally important that assessment is both accurate and appropriate. Clearly, there is room for improvement in the length of time statutory assessment (or similar assessments) will take, but they are lengthy for good reasons. Assessing a child with complex needs is complicated and it is time consuming… Most of all it is very hard work for the child, who can find assessment very stressful. Sometimes just one speech therapy assessment can take one, two or even three hours. Other assessments can be similarly time consuming if done well. Children who have statements, or who would need an Education, Health and Care plan will need a series of appropriate assessments, and it is very important that this is done right. It cannot be rushed simply to save money or to make the system more efficient.

Yesterday, as a parent who commented on the original Green Paper call for views, I received this email from the DfE:

‘As you may be aware, this morning we published our Green Paper Support and aspiration: a new approach to special educational needs and disability.

You helpfully responded to the call for views launched last September as we began our work to develop our Green Paper and I would be very pleased to hear from you again. Please respond to the consultation and let us know what you think of our proposals.

If you would like more information, please visit our website for the full text of the Green Paper, the consultation and other associated documents http://www.education.gov.uk

Best wishes

Ella Joseph

Deputy Director

Special educational needs and disability

Department for Education’

Evidently we still have an opportunity to collectively make comments on the Green Paper. I am heartened that there will, hopefully be an equivalent plan to the statement, and that this is not simply to be scrapped and also that this will be protected by legislation. If enough of us continue to comment during the green paper consultation period, between now and June, and if we do so loudly enough, (even if we did not comment on the original call for views), then I do believe we can affect the eventual outcome and the legislation. Also, the document is very aspirational, and I still can’t see where the funding and the well trained health and education professionals to put these things into practice will come from, bearing in mind that the green paper will rely heavily on services that have been savagely cut. I am deeply worried about the government’s plans to bring in an untrained and unpaid voluntary sector into the identification and meeting of SEN. I think it will take a lot of pressure from the general public to get the government to sort these things out so that our children with SEN and disability can have successful outcomes!

Ever since our oldest son first went to school and I became embroiled in dealing with the system for identifying and meeting special educational needs, and the associated legislation, I have wanted this system to be reformed. I had hoped that this would happen through a truly transparent process where interested bodies and other stakeholders would be asked for their views through a robust process of consultation and open debate. Instead on the very cusp of the proposed reforms, when I should be trembling with expectation, I am instead trembling with fear for what these changes might mean for children with special educational needs and disabilities.

So why am I worried? Although Sarah Teather is nominally the Minister responsible for this process, it is possible to detect the Hand of Gove everywhere! Almost unnoticed in the Academies Act is a section which removes the right of appeal for parents to the Special Educational Needs and Disability Tribunal (SENDT). Instead, all routes of appeal lead only to HIM. And we all know how ‘flexible’ he is, don’t we? Previously it was a more open process adjudicated by independent educationalists who spoke from experience of dealing with all of the issues presented to them in a child’s case.

Why is this so important? We and thousands of ordinary parents like us have been forced to take the extraordinary step of going to a tribunal to make sure that our children can access the curriculum in the same way as every other child. I am worried that the Green Paper will propose new ‘designations’ placing children with challenging or complex needs in a category attracting only a minimal amount of intervention which is delivered at the discretion (or not) of a school or academy. In academies, where parents disagree with the level of help given to their children, all routes for appeal will lead to guess who – the Minister of State for Education. With financial incentives for conversion to academy status more and more schools will seek it and more children with special educational needs will be left without the right of appeal to an independent body.

This government has already demonstrated some very strange attitudes towards disability. On one hand it has produced workable guidance for the Autism Act (though has yet to come up with the money), and on the other some truly dreadful attacks have been levelled at Disability Living Allowance. Maybe this inconsistency is because this government IS a coalition. It’s really frightening to think what the combination of Gove’s ideology and Tory cost cutting could do to this Green Paper.

However, I am still hoping for the best. Hoping for a considered, fair, and most importantly, fully funded system in which children with SEN & Disability have their rights to access to an appropriate education recognised. In a Big Society this would happen because these children can also make valuable contributions. We just need to value them first. Oh, and ‘SHOW ME THE MONEY!’

We are in danger of losing speech & language therapy services for children with Developmental Verbal Dyspraxia (DVD). The NHS Ealing consultation document has this to say about the matter.

‘CHILDREN WITH RARE SPEECH & LANGUAGE DISORDER
MAY BE MISSING OUT ON SPECIALIST NHS SERVICES

Children with Developmental Verbal Dyspraxia (DVD) may not be reaching their full potential due to a lack of specialist services in London, according to a consultation launched this week.

This relatively rare speech and language disorder can have long-term implications if children do not have the right therapy early on in childhood. A new service specific to their needs would, therefore, be in their best interests, as well as highly cost-effective for the NHS and local authorities.

NHS Ealing is running the consultation on behalf of the NHS in London. It offers pupils, parents and carers, health, education, speech and language professionals and the wider public the opportunity to have their say about proposals for future services.

It also seeks to understand what potential service users, providers and commissioners (NHS and local education authorities) would want from a new service.

The consultation follows the suspension in July 2007 of a service run by the Royal Free Hampstead NHS Trust at the Nuffield Speech and Language Unit in Ealing. NHS Ealing then commissioned a review of the demand for specialist services for children with severe speech and language disorders in London.

Now it has developed six service options that could help to meet this need in future, with detailed input from a wide range of interested parties.

These options include building on a service currently delivered at the Royal National Throat, Nose and Ear Hospital (RNTNEH), while the London Specialised Commissioning Group determines longer-term future services for children with DVD.

The recent film ‘The King’s Speech’ has captured the public imagination and has brought to the fore the issue of speech and language impairment. Well dressed and attractive actors portray the story of King George VI and his struggle to overcome his stammer with the help of philanthropic speech therapist Lionel Logue.

The Guardian today runs this article http://www.guardian.co.uk/society/2011/feb/06/speech-therapy-spending-cuts?CMP=twt_gu . It expresses hope that the film will ‘boost the Giving Voice campaign and highlight the social benefits of speech and language therapy (SLT).’ Logue was a philanthropist who used the money charged to his richer clients to fund therapy for poorer people. It is said that he never turned anyone away who asked for his help. This is laudable, as is the charity Giving Voice. However, I am horrified that such an essential service is being down graded to being a charitable case. The speech and language therapy services have historically been undervalued in the NHS, being under resourced and it is usual for long waiting lists to exist for children requiring therapy. Often the window of opportunity for effective treatment is diminished or lost as children wait. When you add up the social cost of children who do not have the right treatment for speech and language impairment, in terms of crime, lost job opportunities, benefit costs, it runs into billions of pounds. When you consider the costs of running an effective speech and language therapy service for all, (mere millions!), it is evident that we must invest in our speech and language therapy services. The government is morally obliged to fund these services properly, and not to rely on charitable institutions.

It is nice to think about the King receiving speech therapy to overcome his stammer, but what about the rest of us? I urge everyone, parents, teachers, medical professionals and the wider public to respond to this consultation. We can’t afford not to do so!

According to The Guardian, the NICE guidance ‘calls for every child with an autism spectrum disorder to be assigned a case co-ordinator to act as a single point of contact, and to have an individual profile created that sets out their needs.’

Surely they are missing a point? The new guidelines only call for children already diagnosed with an autism spectrum disorder (ASD) to have a case co-ordinator. Don’t get me wrong! I welcome the introduction of case co-ordinators to work with children with ASDs but what about all the other children with equally difficult special needs? I do not think access to a case co-ordinator should be dependent on the child being formally diagnosed, or on any specific diagnosis.

Furthermore the article says that NICE has decreed ‘NHS staff need to liaise more and to engage better with schools, social care providers and voluntary sector organisations.’ They do, but surely they also need to liaise more with parents and families who know their children the best?

A case co-ordinator could be of so much help to families right from the time that concerns are first raised about a child’s condition when they first engage with NHS services. This would result in a diagnosis being made more quickly and in needs being met more effectively. Most parents of children with special needs have to go through a huge learning curve before they can be effective advocates for their children and this process can take years. A case co-ordinator who has experience of how the system works could be such a help to parents and children if they are brought in at a much earlier stage as soon as concerns are raised about a child’s development or condition. This is the time when families most need this help and when they are the most vulnerable. A case co-ordinator could pave the way for a child to access early intervention services. Early intervention is the key to children overcoming special needs at school and in life.

So I say to the new NICE guidelines on autism diagnosis, ‘Yes Please!’, but please don’t discriminate against those children with special needs who do not happen to have an autism spectrum condition, and please bring in case co-ordinators much earlier in the process of the identification and meeting of special needs. It is a fact that most children who have their special needs effectively met have motivated parents who learn to navigate the system for identifying and meeting SEN. Case co-ordinators for all children with special needs who access NHS or special education services would have the effect of levelling the playing field and – (I’m going to use a coalition buzz word here) would also make things much fairer.

If we had been presented with a case co-ordinator when Peter was nine years old, had received his diagnosis and also his statement (that came along straight after the diagnosis), we would have had no use for them. However, the early involvement of a case co-ordinator in Peter’s case would have been invaluable to us and would have saved Peter so much time, distress, sadness and despair and many wasted years at primary school.

For those of you who simply wish to read about special educational needs, education or disability issues etc, you should perhaps stop reading now because this post is quite unashamedly political in nature. I was eating breakfast this morning when on Radio 4 I heard yet another government minister/apologist blaming the government’s savage cuts on their ‘inheritance’ from Labour.

It struck me like an epiphany. I’ve got very fed up with hearing this argument recycled, time and time again. Of course they are talking about inheritance because they come from a class in which inheritance (Daddy’s millions) is their birthright, their experience or their expectation. These are people with no understanding whatsoever of what it is like to live in 21st century Britain (don’t forget 19 out of 23 members of the Cabinet are millionaires).

Now, just because I understand now why they think and speak in the way they do, does not mean I feel any less angry or insulted by being patronised in this manner. We are not ‘all in it together’! The society may look big from the top where the Prime Minister and his cronies sit but for people with disabilities and those caring for them our society can be a very lonely place.

My children’s inheritance was genetic conditions, physical, developmental and sensory disability. They are not cushioned from the realities of life by ‘Daddy’s millions’, but they have the same rights to quality of life, family life, and a decent and appropriate education which this government seeks to deny them.

So the next time you hear a government representative or minister speak, listen to the words they use, the callous catchphrases and the spin they employ to try to dupe the public into acceptance of their savagery. Do not be fooled, this is not about saving money to rescue the economy, it is ideological, and it is about deconstructing our public and social structure so that big business can move in and enable those at the top to profit. Today the government is talking about selling off the Forestry Commission. The forests are part of OUR inheritance, for the NATION! Which sector of society do you imagine can afford to buy a forest? Would you rather go to the New Forest or the MacDonald’s New Forest for your holidays (assuming you can afford one this year!)?

How about a catchphrase of my own?

COALITION GOVERNMENT – PUTTING THE GRRR INTO GUERRILLAMUM SINCE MAY 2010!

(And where is the Green Paper for Special Educational Needs and Disability!?)